I got tentively diagnosed today!!!!!!!!

[Guest guest]

Hi Anita,

That is such great news! You have done a great job and I hope they can

further tweak what you have already done for yourself and bring further

improvement. I hope you get a good rest and enjoy the sensation of a goal

reached.

Hope to hear more after you have rested.

:-)

Adam

[Guest guest]

Anita,

comgaratulations!! I know how stressful it can when you feel like it is all in

your head and you can't get nobody to find anything out. Good Luck on you good

prognosis.

Betsy

I got tentively diagnosed today!!!!!!!!

Hi Folks, I got tentatively diagnosed today with

thiamine-responsive PDH, based on my past

test results, symptoms, and MAJOR improvement in symptoms

with the usual

PDH-specific supplements.

It is thought by info out of s Hopkins that the THIAMINE

RESPONSIVE form of PDH is

one of the rarest of the mito diseases (ESPECIALLY IN ADULTS)

and also one of the ones with the most potential for a positive

prognoisis.

I also came home with a prescription for a scooter!

My doc DID go to the nmdf site and read up on it at my request.

She is so excited, too, not just for me,

but because she has other patients who she think probably have

other forms of mito. She a rare one, a

doc who is open minded, listens and gets excited to learn. She

was only running 3 1/2 hours late

today....and a whle lot LONGER once WE left!

Thanks to you for you guidance and support as I worked my way

through " this " . It's been a path

that I have been actively pursuing since '82 , though the earliest

symptoms MAY go back to childhhood. My doc thinks the Lyme

may have been a major trigger

and is excited to see if some other late stage neuro Lyme

patients who have become unresponsive to

treatment might not also have mito problems.

Iam happy, but pooped, especially since I virtually diagnosed

myself with some help from my friends and the Internet!

Best Wishes and thanks,

Anita

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